Hi well first 10 days on chemo and blood test and telephone consultation with hospital doctor. Good news the red cells count is coming down in the right way not to fast not to slow and white cells are staying stable. Nice to have some good news but a phone call is not really as good as face to face but he did take his time and answered all my questions. As it was going well no really bad side effects I can go 4 weeks without a check. I must carry my key worker card with me and watch my temperature but carry on as I have been doing but still no golf.
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Thatās great to hear and may the trajectory continue. Thanks for the update and telling us itās going wellā¦
Hopefully the greens are ever so closer
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Hi @Carolemavis that is good news, I find telephone consultations came be fine.
But I find myself looking at the phone till it rings and then I jump out of my skin when it does and I am trying to hold a phone and find bits, write notes etc.
However there is nothing like a face to face consultation and interaction.
Take lots special care of yourself
I am at the moment in limbo, I know I am getting somewhere with having the chemo but, as people cant see I am ill they tend to think I can just carry on and do everything I did before, especially round the house. I know sometimes I need to feel looked after but as a women and mother we are expected to just carry on. I know this is a bit of me feeling sorry for myself but it feels good to get if of my chest. I normally do feel ok but sometimes when the fatigued hits it is hard to explain I cant carry on. How do others get this across to family and friends.
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Hi @Carolemavis hidden disabilities are so difficult, arenāt they.
I attach the Blood Cancer UK information on Polycythaemia vera (PV)
Polycythaemia vera (PV) | Blood Cancer UK
Blood cancer and fatigue | Blood Cancer UK
You can always give these details to family and friends.
Perhaps be pleasantly assertive and say your needs once in a while, otherwise I find others will expect me to just get on with it and then I get very resentful.
Be very kind to yourself, you are worth it xxxx
Hi @Carolemavis
Fatigue is like wading through treacle at times and it can feel upsetting then our emotions go all over the place and we get it into our mind no one cares
My kids are now used to me having days I canāt do much.
If I need help I ask for it rather than getting cross because they donāt think about me.
Iām a single mum and have encouraged my kids not to be my carer.
If I canāt do the washing up or iron or make dinner I donāt do it. Or I do it in little bursts.
If I canāt clean I do it another day.
I spoil myself like ordering a coffee to be delivered
On the days I really donāt feel like cooking we order a takeaway to be delivered
I call them my rest days 
my kids do jest with me Iām lazy and we laugh about it
After 7 years I think they just accept it is what it is.
Just be kind to yourself do little things that make you happy and delegate
If things donāt get done they donāt get done
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Hi thanks it is great to know I am not the only one . I like you dont want a carer just a bit of help. I am a independent person and it does come hard to ask but I am learning to do it also take my days as they come but it is early days for me. It is great to hear from others going through this journey.
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HI I am also new to the group. Grew up in England moved to Florida. Im 65 and found out about a year ago. treatment must be different in the USA. When i went back for 1 year check up said Hemocrit level high and i was at risk for a stroke, so i gave blood. Told to come back in 6 months and that was it. I Googled to find out not to get dehydrated, food choices seem to be hit or miss. Incredibly depressed and scared. Was told it is rare and only about 100,000 people have in USA so guessing not much funding for any research. And tired. It is very nice to be able to speak and share and get input from others with I am sure same stuff. Thank you.
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Hi @Rsie welcome to our UK support forum.
I realise you are depressed and scared and perhaps look at any support you can access.
Yes, as you say treatments, when they are offered and medications can be different in the USA and many other countries.
Perhaps I have found it is best to ask for and take advice from my medical team and not Google because we are also unique individuals.
I look forward to hearing more about you, I have found that I can be really honest with my thoughts and feelings on here.
You are not alone now, really look after yourself and be very kind to yourself.
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Welcome to the forum. I hope you find value in sharing experiences. The journey can be so difficult. Are you able to access any support groups of support services that may be able to help with how you are feeling?
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Hey there @Rsie, welcome to the forum. Iām sorry to read of your risk of stroke and needing phlebotomy. Am I right in thinking that youāve posted here because you were also diagnosed with Polycythaemia vera (PV)?
Iām a Brit also living in the US like you, and have found online blood cancer resources here pretty scarce, although like me you might find LLS helpfulātheyāre the nearest equivalent American organisation to Blood Cancer UK. Maybe have a look around the LLS website as they offer many different groups, financial information, and other services including peer support.
As for Dr Google, like @Erica wisely says, perhaps try to stick to official blood cancer websites for information instead, or better yet your own doctors. Itās so easy to find out-of-date, inaccurate health information at the end of a quick google. Try not to take information you find online at face value unless itās written by blood cancer specialists.
Do you have a named specialist who knows you and your health history? Iād be tempted to contact them directly and ask for more information about what youāre living with, as it sounds like youāve been left to figure stuff out yourself.
And of course youāve found this forum which is a great support from many people living well with Myeloproliferative neoplasms (MPN) such as Polycythaemia vera (PV). These Myeloproliferative neoplasms (MPN) are indeed rare but there are many of us sharing our experiences around the forum of surviving them.
Do let us know how you get on @Rsie!
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Thank you so much for the input. Next step is to contact Mayo Clinic in Jacksonville for a full evaluation. I understand they are good1 I am in West Palm Beach. I find the Doctors tell you absolutely nothing unless you ask the questions, but when you donāt know what to ask you are just left in the dark so have to do research. Thank you for tip absolutely makes sense to just read on real medical sites. I will give LLS a go as well.
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Thank you, Duncan suggested LLS in the USA, but does not look like they support what I have
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Youāre most welcome @Rsie. I know what you mean about how doctors can not always be forthcoming unless you ask the right question!
My first haematologist, over here in California, gave me the bare minimum information about the Polycythaemia vera (PV) he diagnosed me with, but thankfully my second haematologist is very thoroughāeven if heās sharing difficult information.
Iām still unsure if youāve been diagnosed with Polycythaemia vera (PV) but Iāll share the Blood Cancer UK information here about the family of blood cancers called Myeloproliferative neoplasms (MPN) which Polycythaemia vera (PV) is a type of: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Hereās the LLS equivalent information about Myeloproliferative neoplasms (MPN): Myeloproliferative Neoplasms | Leukemia and Lymphoma Society
You can seek finer details about the type of blood cancer youāve been diagnosed with via the links I just shared.
If youād like to speak to someone in the US, LLS offers highly trained oncology social workers
and nurses on +1-800-955-4572 Monday - Friday, 9 am - 9 pm.
Donāt hesitate to ask if thereās any specific information youāre looking for @Rsie.
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You rock, thank you so very much. Went o first hematologist about a year ago ā 3 visits and she was so bad I still had no clue. Went to another one, he advised did not have hemochromatosis, was so happy I did not hear him say ābut you have what I haveā friend with me heard that but did not think much of it as nothing else was said, except go donate some blood and get a free t-shirt which I found demeaning and insulting (especially as websites state you should not donate as blood is thicker can cause blood clots so hoping these blood donation places check for that). When I went back to second dr last month he said āwell you do know you have polycithemia vera. No, I did not and I was stunned. Took blood test, said I was at risk for a stroke so they took blood and said come back in 6 months. So, assuming giving blood miraculously cured my risk of a stroke, thatās when I went to Dr. Google. Lol. I am getting over the shock and getting my sense of humour back and going to fight not feel like a victim. FYI off to England tomorrow for a family wedding. Bet it will be freezing as in Mansfield. I did already check out LLS, they did not show what I have but from what you have stated below, I will try again and put in the Myeloproliferative neoplasms (MPN). Many thanks.
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Ah so your second haematologist said you have Polycythaemia vera (PV)āwelcome to the blood cancer club no one would ever want to join, but join it we have! Iām sorry youāve been diagnosed with it too. Youāre so right about it feeling stunning. If my experience is anything to go by, Iāve found living well with Polycythaemia vera (PV) is possible with some slight adaptations, and that sense of shock fades somewhat.
First you have your UK wedding to attend though, how exciting! Iām sure you know to wear tight compression socks and to wiggle your feet and move about in-flight to ward off potential clotting.
Our main risk with Polycythaemia vera (PV) is clotting and my haematologist told me to be careful to stay hydrated, and not to add extra iron to our diets. Iām glad you donāt have haemochromatosis, one less thing to worry about Iād say from my non-medical point of view.
Maybe you might like to have a read in more detail about Polycythaemia vera (PV), its risks, and what symptoms to look out for. Hereās the specific Polycythaemia vera (PV) information from BCUK and LLS.
Perhaps reading about Polycythaemia vera (PV) will bring up many questions for you and we often say on the forum to keep note of anything that comes to mind as your specialists should be able to answer these. Also keep note of any symptoms, even ones you might have ignored in the past, as we can develop weaker immune systems with Myeloproliferative neoplasms (MPN) and infections and viruses can have stronger effects.
I wonder if you could contact your GP/family doctor/PCP (sorry I donāt know what theyāre called in Florida) who originally referred you to a haematologist to ask for further clarity. Iād want to ask what the contact details are of your haematologist, their team, and what your treatment plan is. Having 6-monthly blood tests might not be frequent enough with Polycythaemia vera (PV) as our blood cells can proliferate rather randomly. Itās good to know who is keeping an eye on your haematological care Iād say, donāt be shy about finding out.
Really glad you found the forum @Rsie, and I hope you have a lovely trip back to the motherland!
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I would also recommend the MPMVoice website which has a lot of information on Myeloproliferative neoplasms (MPN). It is another UK website.
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Thank you I will look into that.
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Hi Duncan, I am back, very nice wedding. Thank you for the tip on the compression socks, I wore them and tried to move my legs and toes as much as possible. How do I find out about BCUK and LLS I clicked on below but nothing happened. I have changed Doctors again as I want one to give me a plan and do better monitoring not just come back in 6 months, especially as advised at risk for a stroke, Iām way too young for that LOL. I seem to get āfood poisoningā about once a month when I used to be able to eat anything. Has anyone else had this or maybe nothing to do with Vera.
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Hello again @Rsie, so glad to hear you had a very nice visit to the UK, and the compression socks tip helped. Very heartening!
LLS is US-based and offers highly trained oncology social workers and nurses free on +1-800-955-4572 Monday - Friday, 9 am - 9 pm (I think eastern time zone). They should be able to point you towards what you need if they canāt answer your queries.
The LLS website has lots of great information about Polycythaemia vera (PV) and other related Myeloproliferative neoplasms (MPN), have a look around where the following link takes you: Myeloproliferative Neoplasms | Leukemia and Lymphoma Society
BCUK is where I turn to for no-nonsense information about living with Polycythaemia vera (PV), just follow this link: Polycythaemia vera (PV) | Blood Cancer UK
As for that frequent food poisoning Iād speak to my doctor about that if I experienced it as often, do you have a PCP/GP/family doctor? Is there something you eat regularly that might be the culprit?! Iām sorry you experience that at all. Do have that checked out just to be sure.
Be well @Rsie, Iām glad youāre finding the forum helpful.
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